Posted 6/11/2017 6:50 AM (GMT 0)
I did Provenge in Oct 2016. The leukapheresis process with arm veins usually goes well for the vast majority of patients. It's good that they will evaluate your veins first at the nearby blood donation center. I had average veins. The large bore outflow needle was readjusted once during the 1st time. The return needle in the other arm was also moved once, from a middle arm vein to the back of the hand. They might put a blood pressure type cuff on your arms and fine tune it to help set the needles. The machine will start beeping anytime the flow isn't just right. The leukapheresis process takes about 3 continuous hours, with arms kept still for the needles. The attendant records info and asks how you are doing every 15-20 minutes.
A small percentage of patients can sometimes have personal reactions to the effects of the citrate anticoagulant that is added to the blood inside the machine to keep the centrifuge part working smoothly as it separates and collects the cells. I was one the perhaps 1 out of 20 to feel some citrate effects. When the return line blood comes back in, the citrate can immediately chelate some of the serum calcium in the blood. Normally, the liver and other body parts almost immediately react and release calcium from within the body to restore the balance. If it "gets behind", symptoms of citrate toxicity can begin to develop.
In the first hour I began to feel tingling around the lips and numbness in the lower half of my face. At the first report of any such symptoms, the attendant started having me eat a couple of Tums, around every 20 minutes of so. In the second hour, I developed a full body sensation that the couch beneath me was lightly vibrating, when it actually was not. More Tums. In the third hour, my entire body felt like it was "buzzing" lightly all over. More Tums.
(When I was at the 2016 PCRI Conference in a session on Provenge, I heard a more elderly man report that he had some muscle cramps in his extremities toward the end of his leukaphersis. This is reportedly an even rarer possible side effect, but it has been known to happen in the spectrum of things. And, of course, if anybody loses consciousness or experiences any heart problems, the leukapheresis process it halted.)
Then, a few days later, I had the IV reinfusion of the treated cells, aka Provenge, at the regular infusion center. Piece of cake. No reactions. They watch you closely, just in case. about 36 hours later, though, I felt pretty tired and weak for about 3 days. Much like having the flu but with no mucus, sneezing or cough.
A couple of weeks later the second leukapheresis went about the same as the first, with the addition of a massive hot flash about 90 minutes in, accompanied by a vasovagal syncope event (blood draining from head and almost passing out). The attendants immediately lowered my head, raised my feet, and applied iced compresses to my head and neck, before I passed out, fortunately. Otherwise they would have had to stop.
Reinfusion #2 also went well, as did how I was feeling, Provenge-wise, afterward.
Unfortunately, shortly after the end of reinfusion #2 I went into an unrelated heart rhythm problem that had to be treated, and made a decision to discontinue, getting only 2 of the 3 Provenge treatments.
Finally, about 2 days after reinfusion #2, the peripheral arm vein that was used for the outflow during the leukapheresis procedures developed a blood clot, and surrounding inflammation. Probably as a result of the approximately 8 hours of trauma by the large bore needles, resets, and IVs in a two week period. It cleared after 3-4 days applying hot wet compresses.
Would I do it again? Yes. Did the other men sitting right beside me during leukapheresis for Provenge have any of the same symptoms? No. None whatsoever.